Sunday, December 10, 2006

A Socio-cultural Perspective Unmasks Ineffective Surveillance Methods for Defining HIV in Asian/Pacific Islander Communities – Maria Pena


Approximately 13.5 million people living in the United States self-identify as Asian or Asian in combination with one or more other races, according to the US Census. This particular racial group comprises 5% of the total US population (1). In addition, there are approximately 959,603 US residents who identify as native Hawaiian or other Pacific Islander or in combination with one or more races. Pacific Islanders comprise 0.3% of the total US population (1). APIs encompass over 70 different and unique ethnicities and nationalities that speak over 100 different languages and dialects with a variety of religious and cultural beliefs. The term of “Asian” refers to those having origins in the Far East, Southeast Asia, or the Indian subcontinent including but not limited to: Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam. The term of “Pacific Islander” refers to those having origins including but not limited to Hawaii, Guam, Samoa, or other Pacific Islands (2). Asians and Pacific Islanders consist of a significant proportion of the U.S. population and live in various states within the United States. As a growing population within the United States, current HIV surveillance assumes that HIV and AIDS have minimally impacted this racial/ethnic population, which is far from the true nature of HIV infection in Asian/Pacific Islander communities.

At the end of 2005, an estimated 476,095 people were living with HIV/AIDS within the total US population (3). According to current HIV surveillance, Asian/Pacific Islanders (APIs) account for approximately less than 1% of the total population living with HIV/AIDS which is estimated at 3,008 API individuals living with HIV/AIDS (4). However, data indicate that the rate of HIV cases among Asian/Pacific Islanders is steadily increasing over time. According to the U.S. Census, Asian/Pacific Islanders are the fastest growing racial group in the United States with reports of annual growths of some API ethnicities as high as 115% (5). Globally, the impact of HIV and AIDS is at devastating proportions in Asian and Pacific Island countries. So, it seems there may be a disconnect as to the impact of HIV and AIDS in Asian/Pacific Islanders in the United States compared to the impact of HIV and AIDS across the world. Are APIs in the United States at less risk for HIV/AIDS? Or, should we be asking ourselves - are we accurately accounting for HIV among API communities in the United States?

HIV surveillance is necessary in order to define the problem of HIV and provide an understanding of the impact of HIV on the population. Current HIV surveillance methods do not capture all cases of HIV in Asian/Pacific Islander communities, nor adequately represent the impact of HIV in the API community. Asian/Pacific Islanders are as susceptible to HIV infection as other communities of color, yet reported HIV prevalence of HIV/AIDS infection in API communities occurs at significantly lower rates from that of other communities of color. The low numbers of reported HIV cases among API communities are misleading and undermine an accurate definition of HIV infection in the API community. Unique cultural issues factor into the lower rates of HIV infection reported through HIV surveillance methods. These cultural issues include the concept of Asian/Pacific Islanders as a “model minority” and HIV stigma in the API community, which prevent Asian/Pacific Islanders from getting tested for HIV or acknowledging their risk for HIV. In addition, the low rates of HIV prevalence in the API community could be attributed to inadequate surveillance methods that include underreporting, misclassification, and aggregated data.

These issues can be examined through using theory from social science concepts (model minority and stigma), social epidemiology, psychology, and cultural studies. Examining HIV surveillance in API communities through a lens of social and behavioral sciences can give us greater depth into understanding the true nature of the HIV epidemic in API communities. Also, we may gain greater insight to improve current HIV surveillance in a way that further defines the problem of HIV in API communities and assists us in developing effective interventions.

HIV Surveillance Methods

Current HIV case surveillance methods includes passive and active reporting. Passive reporting consists of health practitioners, health facilities and laboratories reporting cases of HIV to state and local health departments (6). The advantage of passive reporting is that HIV cases are reported as they are encountered in the health facility or laboratory which provides HIV testing. The disadvantage is that cases are reported only if the individual goes to the facility to be tested for HIV. Within the API community, unique cultural issues prevent Asian/Pacific Islanders from accessing HIV testing services including stigma and the impact of the “model minority” label on Asian/Pacific Islanders. The cultural barriers can result in underreporting of HIV in the API community.

Active reporting consists of health department personnel collecting data through a review of health facility records and contacting health practitioners (6). The advantage of the active reporting system is that cases are actively sought and reviewed by personnel sent to the facilities and this process contributes to an increase in the number and proportion of HIV cases that are reported. However, the disadvantage is that if there is no clear indication of the race or ethnicity of the patient, the patient can be misclassified as another ethnic group. For example, many Filipino surnames are Spanish in origin and have been misclassified as Latino in the medical record if the person did not self-identify at their visit. In addition, if an API individual does not acknowledge his or her HIV risk or diagnosis based on HIV stigma or other cultural issues, the individual may have a disease or symptom listed in their medical record that may not be connected to their HIV status. The result is that the disease or symptom is classified as something other than HIV and subsequently is not reported accurately to the health department. The lower rates could be attributed to inadequate surveillance methods and contribute to underreporting, inaccurate surveillance data, and misclassification of HIV cases among the API population in the United States.

Cultural Barriers – The Model Minority Myth and HIV Stigma

Asian/Pacific Islanders have historically been characterized as the “model minority.” The term of “model minority” refers to any subgroup of a population (racial, ethnic, or religious group) whereby its members achieve a higher degree of success than the population average (7). This common and enduring misconception about Asian/Pacific Islanders supposes that APIs achieve higher income status, higher education levels, and are healthier than other communities of color, which is contrary to the reality of many APIs in the United States. Many are lower income, monolingual or have limited English proficiency, lower education status, and are new immigrants (with or without legal immigration status) with no access to adequate health care. The “model minority” concept has also been attributed as a reason for the low HIV prevalence. The implications of labeling Asian/Pacific Islanders as a “model minority” contributes to an unrealistic belief by US health professionals that APIs do not engage in risk behavior that could expose them to HIV (5).

HIV stigma is also a negative factor that prevents APIs from accessing HIV services and testing, and acknowledging risk for HIV and AIDS. The concept of stigma comes from sociologist Irving Goffman, who describes stigma as a “powerfully discrediting and tainting label that reduces an individual’s self-perception.” (8). The impact of HIV stigma can be severe in the API community and is based on deeply ingrained socio-cultural norms associated with behaviors perceived to be immoral – homosexuality, promiscuity, sexual activity, and drug use (9). The perceived consequences of HIV stigma are social isolation, feeling of negative self-worth, loss of family or social support, and psychological distress from fear of disclosure or fear of marginalization (9). In American culture, we are socialized to view life in individual terms. However, many API cultures view life in terms of a group context - the behaviors of an individual reflect on the group, family honor and reputation is paramount, and the community’s perception of the individual is important. Our identities are fundamentally developed in relation to the ingrained cultural norms and group context in which we are immersed (10).

Asian and Pacific Islanders are less likely than others to get tested for HIV due these cultural barriers. HIV stigma and negative attitudes towards APIs infected with HIV prevent Asian/Pacific Islanders from getting tested or acknowledging their risk for HIV. HIV stigma and negative attitudes of HIV and AIDS are significant and may be more difficult to overcome in the Asian/Pacific Islander community if approached from an individual context. Acknowledging the group or community context is essential to reduce the stigma of HIV and can lead to more APIs getting tested to know their HIV status. In turn, it may improve HIV surveillance in API communities.

The Challenge of Aggregated Data

The lack of adequate detailed HIV surveillance is a major issue due in part to the very expansive diversity that exists within the API community. The HIV surveillance data that are collected of API individuals are aggregated data that does not accurately reflect the prevalence of HIV in API communities. As mentioned earlier, APIs comprise approximately less than 1% of total HIV/AIDS cases (476,095 cases of HIV/AIDS at the end of 2005) in the United States (3). As a racial group, it seems that APIs are not experiencing as severe an impact of HIV as other racial groups compared to African-Americans, representing more than half of the total HIV cases in the US. When there are low numbers of APIs of different ethnicities and cultures who are getting tested for HIV, it seems logical to aggregate the data instead of listing it by ethnicity. After all, HIV surveillance data on African-Americans and Latinos are aggregated and not distinguished by ethnicity or country of origin. But, the aggregated HIV surveillance data among APIs mislead the public and public health officials to believe that the true nature of HIV infection in the API community is not as high a priority as in other racial groups.

The truth is that HIV cases are on a steady increase in the API population and given the growth rates of APIs in the US, we may be looking at an upsurge of HIV cases in the future like that experienced in the African-American communities. According to the CDC, there was a 25% increase in the number of AIDS cases among APIs from 1999 to 2002 (11). Disaggregating HIV surveillance data among APIs by ethnicity will provide a more accurate picture of the impact of HIV in API communities. If data were differentiated by ethnicity, we would see a much different view of API communities.

APIs comprise of over 70 different and unique ethnicities and nationalities that speak over 100 different languages and dialects with a variety of religious and cultural beliefs. Different ethnicities present different modes of HIV infection, so detailed surveillance information of distinct API ethnicities can be valuable information to guide prevention planning and intervention. For example, studies indicate that same-sex sexual behavior is more prevalent in Filipino communities and injection drug use is more prevalent in Southeast Asian cultures (11). Also, a few states report HIV/AIDS prevalence among APIs by ethnicity and national origin due to the significant proportions of API populations that reside in these states – California, Hawaii, New Mexico, New York (12). However, there are many API communities living in many different states and in different proportions of ethnicities within state populations.


Asian and Pacific Islanders are the fastest growing population in the United States in recent years and with them comes various socio-demographic and cultural factors that impact their health that contribute to the health disparities inherent in the API community. The prevalence of HIV and AIDS may be lower in API communities, but that statistical representation barely scratches the surface when looking at the true nature of the HIV/AIDS epidemic among APIs in the United States. Re-evaluating and restructuring the HIV surveillance systems to meet the unique cultural needs of the API community is essential in truly defining the problem of HIV in the US and developing effective interventions. HIV and AIDS are increasing in communities of color, and what is effective in one community is not necessarily effective in another.

While HIV stigma is not a unique concept among all races, ethnicities and cultures, the implications and consequences of HIV stigma within the API community are unique and severe based on such ingrained socio-cultural norms and the group context of API cultures. Stigma is difficult to overcome and may take significantly longer to overpower if strategies are based on an individual context. Labeling the API community as a model minority complicates HIV prevention and testing and provides a false image of the realities experienced in the API community.

If we are to adequately address and define the problem of HIV especially in our Asian and Pacific Islander communities, we must clearly invest in methods that overcome the challenges that currently exist in HIV surveillance systems. Without resources to confront HIV stigma in API communities and without disaggregated HIV reporting systems, we are in danger of inaccurately defining the problem of HIV that can lead to a severe HIV epidemic in API communities. The consequence would not only be detrimental for API communities, but to all communities in our country.


(1) US Census Bureau: Asian/Pacific American Heritage Month Facts Features, May 2005. US Census Bureau. Release/www/releases/archives/cb05-ff.06.pdf

(2) Reeves, Terrance and Claudette Bennett, 2003. The Asian and Pacific Islander Population in the United States: March 2002, Current Population Reports, P20-540, U.S. Census Bureau, Washington, DC.

(3) Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report, 2005. Vol. 17. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention; 2006:

(4) CDC HIV/AIDS Fact Sheet: HIV/AIDS Among Asians and Pacific Islanders, April 2006. Centers for Disease Control and Prevention. National Center for HIV, STD, and TB Prevention, Division of HIV/AIDS Prevention, Surveillance Branch.

(5) Debunking the “Model Minority” Myth: Prevention for Asians and Pacific Islanders, June 25, 2004. AIDS Action Weekly Update Special Edition, Report from the HIV Prevention Leadership Summit, Atlanta, GA, June 16-19, 2004.

(6) HIV Surveillance Methods: L266 Slide Series, March 2, 2002. Centers for Disease Control and Prevention. National Center for HIV, STD, and TB Prevention, Division of HIV/AIDS Prevention, Surveillance Branch.

(7) Wikipedia: The Free Encyclopedia, Internet search engine.

(8) Goffman, I. (1963). Stigma: Notes on the management of a spoiled identity. New York, Simon and Schuster.

(9) Kang et al., (2005). Multiple Dimensions of HIV Stigma and Psychological Distress Among Asian and Pacific Islanders Living with HIV Illness. AIDS and Behavior, vol.9, no. 2, June 2005.

(10) Adams, Bell & Griffin (1997). Teaching for Diversity and Social Justice: A Sourcebook. (p.9). Routledge: New York and London.

(11) Zaidi et al. (2005). Epidemiology of HIV/AIDS Among Asians and Pacific Islanders in the United States. AIDS Education and Prevention, vol. 17, no. 5, pp 405-417.

(12) Asian Pacific Islander American Health Forum (APIAHF). July 2003. Health Brief: Asian Americans and Pacific Islanders and HIV/AIDS. San Francisco: APIAHF.


Anonymous Kelly said...

I can't believe you were able to concentrate long enough to write that! OK...I couldn't concentrate enough to read it word for word but I did skim:) Very impressive!!

6:46 AM  

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